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Posted 2/23/2014 4:38 AM (GMT 0)
Hello my name is Mike. A year and 3 months ago I started a relationship with the love of my life Amanda. I have known little of her medical past, but now I've gotten the opportunity to involve and educate myself in her life. Amanda has the worst kind of Endometriosis. She has had 24 surgeries, including hysterectomy, nerve ablation, opharectomy, 14 laporoscopies and few more I may have missed. Excuse my spelling.

We lived in MI and have recently moved to Indiana for work. It's been hell finding new doctors to take over her care. She is 29 now and have been dealing with this sick disease since 17. If the burden of never carrying a baby wasn't bad enough it's all the pain she deals with everyday. Doctors look at us like criminals when we go to ER for pain, Pain dr. questioned every decision she has made in her life dating 10 years ago, her primary limits his care for her and advises us to go to ER if it gets that bad, which we have before, they wouldn't give her nothing more than Tylenol, and give us the "RX abuse speech". She has been doing so good with keeping up with new tests, appointments and being a phenomenal person in between. I am running out of options though. I feel there is still an underlying issue that we haven't caught. Doctors never find anything other than a recurring cyst that forms on her ovary. We've been told its perhaps scar tissue that's causing this pain. We've ruled out so many diseases already that we are just getting burnt out. Her PAIN doctor as of now has reduced her medications down to HALF after our first visit, which she has ran out now and rolling in bed in agony until we see him this MON. His bedside manner is atrocious but he is the only DOCTOR in our area that is covered through INS and handles pelvic/abdominal pain. Their is so much more to say but what I'm getting at is we need guidance. How do we handle these doctors that give you that "look", how do we seek other doctors that we have a better chance at taking over her care? I will not give up, and I'll do what I have to so that her quality of life is as good as it can get. Any help would be appreciated, please ask away any questions, I tried to make this short.

If I have posted in the wrong section please advise. I've already spotted a few members I'd love to reach out to as they sound like similar cases to Amanda's history. Also anyone in the FORT WAYNE, IN area that can give us a heads up on any type of doctor they know would be outstanding.

Thanks for your time,

Mike

Post Edited (Amanda & Mike) : 2/22/2014 9:42:33 PM (GMT-7)

Posted 2/23/2014 5:03 AM (GMT 0)
Hello Mike!….and Welcome!

I'm guessing that the ladies here may understand, and possibly have more to offer in they way of suggestions, since this is dealing with female issues. It's great, and I commend you for doing research out of compassion for her. She is a lucky girl!

There is a search button located here on this page in the upper righthand corner. Give it a tap, and then type in the words of interest to you. There should be several post with this subject tied to them. Of course, keep checking here for current replies to your post as well.

Anyways, I just wanted to stop by and give a warm welcome to you both. Enjoy the forum!

SE
Posted 2/23/2014 5:09 AM (GMT 0)
Hi Mike,

I'm so sorry you are both going through this. I suffer from chronic pelvic pain a and endo (stage three) myself and I'm in Michigan. Perhaps the endometriosis isn't the cause of her pain. Has she reached out to a pain management specialist to help with her pain control? My doctors are afraid to diagnosis my CPPas being from the endo only for this very reason. Has she tried trigger ppoint injections and/or other tests to see if its unrelated to the endo?

She is very lucky to have such a concerned and understanding boyfriend and I want to thank you for staying bu her side. I know its not easy to see someone you love so much in constant pain. I hope you stick around the forum, there are so many helpful folks here. If you have any questions, please ask!
Posted 2/23/2014 5:11 AM (GMT 0)
Also, I would carry her surgical reports around with you so ER docs can see how much endo is cleaned up during her laprascopic surgeries. Maybe that will cut down on the looks. Its so hard to find endo unless you go in surgically but if they see the reports, they can see how badly she accumulates endo and that might help them understand that she is in legimate pain.
Posted 2/23/2014 5:26 AM (GMT 0)
Welcome! And sorry that our wife's pain is so severe....and not getting sufficient help on top of all that...

Also, want to give you some congrats and respect that you are such an understanding partner to your girlfriend. It means the world to those in pain to have someone close that not only believes the pain is real, but willing to go above and beyond to help. I know it must be tough to see your lover writhe in pain and misery....but I'm sure you being there is helpful.

I really wish I could help you guys find a better doctor who would be not only understanding...but willing to actually help.

Sometimes patience is the key...I know that is a hard pill to swallow...but sometimes you have to build up trust with the doctor...

When I arrived at my Pain Management office...the doctor(really the Physician's assistant) cut my pain medication down by a quarter...and we tried different medications, injections, etc etc...

It took almost a year later to eventually move my medication not only up to where I was, but a smidgen beyond it.

So, maybe, just maybe all you two need to do is build up a trusting relationship with this doctor...it'll be hard...definitely was for me.

I'd be careful on visiting other doctor's if you find other's that deal with Chronic Pain...not to say you guys shouldn't...but don't visit too many.

And DEFINITELY do not accept other pain medication Rx from other doctors!!! I'm not suggesting she(or even you) abuse medication...but these are rough time for CPer...adding "doctor shopping/multi Rx use" on top of it will make it that much harder.

Not trying to scare ya, or judge ya. Just trying to help :-)
Posted 2/23/2014 5:34 AM (GMT 0)
Thank you ScreamingEagle for your kind words. I have been using the search option and it is working out great! Thank you for that and the warm welcome.

Thank you Linds, and you were actually one of the members I saw that has similar condition to Amanda. She is at Stage 4, and although I am not sure about the injection, I know through conversation she has done everything known to medical science. Intense medications, surgeries, experimental procedures etc etc. Some of which she explains turned her crazy, literally and had zero affect.

It hurts to know that leading up to us getting together, I had learned about her doctor in Grand Rapids, and his very questionable care. He led her on to believe that she will need a laporoscopy done every 6 months and for 4+ years this became routine. Verbally stating to her and her family after each surgery that "he saw alot of ENDO and it has been removed". It wasn't until our first visit with a OBG here in Indiana that he reviewed those OP NOTES and nowhere stated endo was found, but just scar tissue was removed. Something else we are dealing with.

I've become as pro-active as I can with making sure I'm getting her the best doctors that's available to us, and at this point will drive her any distance to make sure we are seeing the right doctor. She is very kindhearted and honest and very sensitive. I'm sure you can relate in some fashion that when we get these reactions from DOCTORS we are suppose to trust, it's hard to get her to go back when they have zero bedside manner and question her condition. The OBG we were seeing although professional was very cocky and undermined her pain level. It took 4 visits to convince him there is an issue, and finally scheduled her first laporoscopy and found that her ovary and appendix were "glued" to eachother causing the ovary to tug. He exclaimed equivalent to someone tightly grabbing a mans testicles and yanking vigorously. We are now in search for a new OBG.

I'm from South Lyon, she is from Grand Rapids.

How does your schedule look like with your doctors? How often do you see your OBG, Pain DR? I'm trying to get Amanda on a schedule so we don't fall into this position again where she has one of her REALLY rough days and out of medication, only to be left miserable.

Thank you also for your help and kind words Linds.
Posted 2/23/2014 5:49 AM (GMT 0)
Thank you MrJNT, I really appreciate your input, advice and compliments.

I have to say Amanda and I come from two way different backgrounds. I have never had an IV, had surgery, broke a leg, much less a finger, and the strongest MEDS I've ever taken was an 800 motrin when I pulled a muscle in my back. As you may notice, the constant doctor appointments, test, surgeons, OBG's, pain DR, etc was VERY new to me.

Our second time in the ER together way back, she told me when she laid in the hospital bed, that she has never known what its like to be on my side of the bed. I looked at her and said, I've never known what its like to be on your side. It was then I knew I would never leave her side. I applaud any man and woman that can support there SO because I know how tough it can be, but our drive will never be stopped.

The only issue we ran into was that we did see 2 prior Nurse Pract prior to this doctor, but due to INS reasons, we had to stop going. Although we did see them, we explained to our DR that we did that only because we were referred through her primary and insurance kept dropping them. He understood but was definitely annoying about it. Thank you for sharing your experience though. It will help to approach the doctor on MON. As you can imagine, I'm upset that he cut down her dosages so abrupt. I would never want to jeopardize her care because of my mouth, so I'll make sure to be compliant but supportive of her conversation with him. I do chime in when needed, but must understand these are narcotics and even though her goal is to ween down, doing so overnight will not work. I have much to read with all your experiences and much to learn.

Thank you all very much for your quick responses. It has been very helpful.
Posted 2/23/2014 6:31 AM (GMT 0)
Welcome to our forum, although I am sorry you needed to be here because of this pain.

There are caregivers who tire quickly and become frustrated with the chronicity of it all, but it sounds to me like your young lady is a very lucky woman to have you by her side, in every single way!

Get copies, start now as it'll take forever, what with signing records release authorizations. Everything. Every surgical note, nurse's note, Emergency Department note, routine visit, every procedure....get the films if you can (they are yours, you paid for them), and get the disks of any MRI's etc that were performed.

I'd even make backup copies to be honest, just in case.

Put them in order, oldest in the back, newest in the front.

Get lists from the pharmacies she's been to so they can itemize all the meds she's been on.

EVERY appointment, bring a COPY of these extensive records with you.

I am SO happy she has you with her as an advocate and support system.

Go with her to appointments and take notes (to catch where potential discrepancies may be made, and feel free to often repeat with the doctor said as you write it down....it's helpful for him to know you're taking these notes as thoroughly as you are....it may even help ensure he writes what he implies in her chart).

You need to see what the doctors are writing in her chart.

My lay-person, non-doctor, un-medical, un-professional opinion is that she is being extremely undertreated, but I do not know why. Those complete medical records (and ask when you get the copies if these are in total and complete) are going to be crucial.

You sound like a keeper and she's very, very lucky to have you, and it's heart-warming to see how involved you are in her care.



M.
Posted 2/23/2014 7:16 AM (GMT 0)
Welcome Mike and how refreshing to see such dedication! I'm always sorry to welcome anyone into this crazy world of chronic pain but from experience a support forum such as this can be a blessing, a beacon of light. With our personal experience and decades of trial and error we actually offer hope and sometimes answers that help.

This forum is vast and my hope for Amanda is someone knows a Dr to direct you all to.I have to say Indiana just happened to be the tail end state in the drug wars and possibly looking at Missouri would be better? Ky out of the equation altogether.

From my experience Drs that deal with fertility have far greater knowledge in pelvic issues then regular OB/Gyns.

Hoping for answers for you all and relief for her especially! Please keep up the fight for finding relief and never accept the "all we can do's " advocate for more!

We will help all we can.
Posted 2/23/2014 7:45 AM (GMT 0)
I'm glad I can help, if I can... In any way! I'm so sorry about the post op notes not including the removal of endo. After my first surgery I went through the same exact thing! My doctor told my dad that he found the endo and cleaned it up and went I switched to my pelvic pain specialist, he read the surgical notes and not one mention of cleaning the endo... He just stated that he saw it and there were pictures.

I see my pain management doctor once a month, I see my OB/GYN every six months and I see the pelvic pain specialist once a year.

I know you aren't in the area any longer (of course, even when you were up here we were on different sides of the state) but my pelvic pain. Specialist may be able to point you in the direction of someone in your area. His name is David Eisenstein and the number is 248-661-4100.

You mentioned that in the last surgery (where Amanda's ovary was glued) that they removed endo... Did you get that surgical note? If so, take it with you when you are meeting with docs or if you have to go to ER to check for cysts. I get a LOT of chocolate cyst where my endo accumulates on my ovary... Perhaps that is the cause for Amanda's spikes too? They had me on Depot Lupron but stopped it during my last visit since I've had increased pain reliefwith my ccurrent treatment plan. I can relate to the procedures and treatments she's tried and there is probably more to come but I hope she is able to stay positive and hopeful that she won't feel this way forever. I'm so sorry she had to have a hysterectomy, I did too and that is one of the biggest scars this disease can leave behind. There's another website I want to tell you and Amanda about called www.hystersisters.com. its a support group that focuses on post a hysterectomy woman and so many of them have endometriosis and pelvic pain. They can also helps with the mourning that we can experience after losing the ability to have children.

There are quite a few women that have tried the violet petal study, not sure if Amanda has considered that (insurance wouldnt be an issue because they treat participants for free!!)... And the website has traditional and unorthodox ways of treating endo.

I find that using both these websites together are tremendous and I feel like HW is my home.

If you have any other questions, please let me know. I'm on here everyday and will answer as soon as I can. My heart goes out for both of you.
Posted 2/23/2014 7:58 AM (GMT 0)
Thank you Merrida for the time you took out to give me great advice. I am in the works still gathering medical records from ALL the hospitals and doctors we have seen in the last year. I'm also still working on medical records from her DR in Grand Rapids where she has the most history from but that's in the lawyers hands.

Indeed you couldn't be anymore right, it's a long drawn process to get these records, especially in a timely manner. I have started a binder of all information and surgical discs, I will need to work on gathering her MRI and ultrasound discs. Every doctor orders a new one and the exposure to radiation worries me. I'm trying to limit this down. But again thank you for your support and kind words.

nvrthesame - Thank you very much! I know we'll get somewhere soon. I've learned we have to doctor our doctors. I refuse to be a cold case. I'm unaware of the drug wars from state to state but i'll look more into that as well. We have seen a fertility spec. that was over 2 hours drive from us, but added to our blacklist as he wasn't listening to her and was weird at that but willing to try another. I was actually talking with her today and brought up the MAYO clinic. I know she was there before when she tried IUI but we wanted to go back for further expertise and discuss other options. So it's on our to-do-list. :)

Thank you all so much though for all your support. It helps so much. My heart also goes out to all of you that have had to battle this your whole life. I will keep you all in my prayers.

Mike
Posted 2/23/2014 2:52 PM (GMT 0)
Thank you so much Linds for all the many references. I'll try to stay in order here from what you've mentioned.

The last LAP she had done and her first in INDY was when they found her organs glued. At that point there actually was no trace of endo. She had 2 cysts on her ovary though, one fairly large, the other was smaller that the DR removed. It was that same DR that told us after reviewing her last 3 op notes, her former DR in Grand Rapids had mentioned no removal of ENDO but only stated adhesions and scar tissue. Verbally telling Amanda and her family though that he did remove endo. That's where it gets shady...

I couldn't have lived too far, 248 is a common number. I lived in Dearborn for most of my life, moved to Canton, then to South Lyon which is Novi/Northville area. I've worked in Canton, Royal Oak and even Troy. Thank you for the phone number and I will definitely give the office a call Monday to seek any information. I think we are both more inclined to seek doctors where I lived since I have all my family there.

It is common for Amanda to get recurring cysts. I'm sure they add to her spiked pain, I don't think they are the root cause to her BAD days. We know she has 1 already, size wasn't all too big compared to what she has had in the past, and we are due for a ultrasound so that'll tell us if its grown.

Thank you for your compassion in her hysterectomy. My heart goes out to you for the scar it's left behind for you. I know Amanda takes that the hardest. We would love to do IVF but because of its success rate and $$ it's a very tough decision for us to make. Also Amanda has had 2 failed IUI in the past. She also stated the toll it takes on your body to start the process of producing the eggs and how close to perfect your health has to be she said is very tough to even think about. Hence why she has kept her last ovary still. Thank you for the website, I have been there before, but maybe this time I'll ask Amanda to join me in reading peoples stories and get her jump-started on these resources.

I am going to look up the violet petal study, I have never heard of it and I know Amanda has never said anything about it. Thank you for that piece.

As of now, she is still very miserable until we see our PMD tomorrow for our 1 month. She passed a blood clot last night through urine and has before about a week ago. I'm not sure if this is something we discuss with the PMD or leave it to her PCP(although were looking for a new one)?

Thank you so much Linds for your time.

Mike
Posted 2/23/2014 3:38 PM (GMT 0)
Oh wow! I thought you were from the Grand Rapids area! We are definitely from the same areas. Dr Eisenstein is with Henry Ford in West Bloomfield. I am pretty sire that he can be an excellent resource and will hopefully get you pointed in the right direction.

Good Luck! :0)
Posted 2/24/2014 4:03 PM (GMT 0)
Hello Linds I was wondering if it would be okay to have Amanda talk to you via email? I told her about the forum and this thread and she wants to reach out to you. If that's okay we can swap via PM.

Hope your having a great day.

Mike
Posted 2/24/2014 4:46 PM (GMT 0)
We don't have a pm function on this website... My email is listed in my profile. I'm be more than happy to email with Amanda. (I would list my email in this message but the forum advises against it.)
Posted 2/24/2014 8:48 PM (GMT 0)
Mike if you will look to the left & click Linds name it will take you to where her email address will show up.
Posted 2/26/2014 2:51 AM (GMT 0)
Linds - Thank you so much for doing that for us. Amanda is very excited to reach out to you. We just had a really bad visit with her PMD - in short, Amanda shouldn't be in pain because CT scans say so. This is what were battling. There is a lot more to it, but end conclusion we will be needing to seek out to another PAIN Doctor that understands the disease, her surgical history and concludes that just because test results do not show pain, doesn't EVER mean the patient does not undergo pain.

Because of her laundry list of GI issues we have found a very good GI where we will be having a colonoscopy ordered that will rule out the last of GI diseases we were thinking about. I gave her your email so I'm so happy she has someone who can relate that she can talk with. That alone will mean so much to her and I.

Stray - Thanks for pointing out the email, I swear the email wasn't available when I asked but maybe because I was on my phone and just didn't notice lol.
Posted 2/26/2014 4:05 AM (GMT 0)
Mike you can only see email info if your logged on to the forum and not just lurking as a guest! It's possible you were not signed in on your phone? I use to do that going from one device to another, way back before looking at the page I immediately now know I'm not logged in by the page appearance!
Posted 2/26/2014 4:31 AM (GMT 0)
Mike, I had it turned off before for privacy reasons. I made it visible again specifically for Amanda. When you checked it was either before I made it visible again or the change wasn't effective immediately.

She can email me anytime! :0)

Linds
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